Tag Archives: Ari Ne’eman

I’m honored to be a guest on Human Potential‘s blog talk radio show, The Importance of Allies With Ariane Zurcher, airing tonight at 9pm EDT.

If you have not viewed the two youtube videos of Ari Ne’eman’s speech and Emma’s, where she writes a message to parents about autism, I hope you’ll take the time to do so now. Please feel free to share widely.

As both kids are on spring break this week, I asked them whether they wanted to have a “sibling chat”. Both agreed. What has occurred as a result is nothing short of incredible. Understandings have been forged, exchanges of ideas and beliefs have been made. They have listened to each other, asked questions, shown patience and tremendous compassion for one another and in the end grown closer… Many people take these types of conversations for granted. But we do not.

My fabulous husband, Richard Long, has edited the videos of Ari’ Ne’eman’s and Emma Zurcher-Long’s presentation April 2nd at CoNGO (The Conference of Non-Governmental Organizations in Consultative Relationship with the United Nations).

As Richard edited Ari’s terrific speech, Emma was in the room looking at the iPhoto library I keep on my computer, which is near the computer Richard was editing on. At one point Ari describes the Autism Speaks video when a mother describes (in front of her non-speaking autistic daughter, who attempts to hug her mother several times as she talks) how she thought about driving off the George Washington Bridge with her autistic daughter strapped into the back seat, but doesn’t, for the sake of her other child who is not autistic. As Richard had taken a still shot of Ari just at that moment, he needed to edit out the pause that was caused by the still shot and so had to repeat this portion of the video over and over and over.

Emma and I have discussed this video before and though I’ve not shown it to her I wondered whether she was ever in the room when either Richard or I watched it. By the fourth edit of that particular section, I looked over at my daughter who showed no outward sign of upset and whispered, “Emmy, is this upsetting you?” (I know, talk about asking the obvious…)

I am painfully aware that by writing about this I open myself up to all kinds of judgement and criticism, but I believe my insensitivity and slow response is an excellent example of the general malaise society has regarding messages like this one that Ari discusses and that are so cavalierly displayed with regularity not only by Autism Speaks, but a great many organizations and autism experts, which are then repeated in the media. If none of us are able to admit ignorance and our less than ideal reactions, but only point fingers at others, there will be no conversation and little will change. So I’m willing to reluctantly admit that it took having that section on repeat before it occurred to me to get my intensely sensitive daughter out of the room to discuss the Autism Speaks video in more detail.

This idea that our children and people (of all neurologies) hear these things, but because those who cannot communicate through spoken language are therefore thought to not be able to understand what is being said, is one of the more destructive assumptions made. And what about those who do speak, are their feelings not important? These kinds of messages, stated both publicly and privately without thought of the impact this has, encourages prejudice and intolerance, focuses on the suffering, not of the child, but of the parent because of the child, only fuels anger and fear. Meanwhile Autistic people’s feelings are ignored, their response and reactions to such messages are considered, if at all, of little importance.

“Come Emma, let’s go in the other room.” I suggested. Once outside I asked Emma if she wanted to discuss the video Ari was referring to. Emma wrote, “The video has a mom who is lost and cannot rationalize hope.” Then a little later Emma wrote, “Autistic people are not viewed as able beings, this view makes us suffer.” Read that again –

“Autistic people are not viewed as able beings, this view makes us suffer.”

After Ari’s terrific talk, Emma and I were introduced. Watch Emma writing her final sentence regarding autism and acceptance, which says it all…

Tuesday night I received a message from Jess of the blog – Diary of a Mom – telling me she wasn’t feeling great, was supposed to get on an airplane the next morning to come to New York City to give a presentation, along with Ari Ne’eman, co-founder of ASAN (Autistic Self Advocacy Network) at CoNGO (Conference of NGO’s) in consultative relationship with the UN. She asked me if I’d be able to step in if she still felt awful Wednesday morning. I told her, not to worry, “we’ve got this,” urged her to drink liquids and get lots of rest, but that I fully expected her to wake feeling much better and that none of this would be necessary.

Fade to the following day.

Jess texts me to say she’s feeling wretched, definitely has the flu, there’s no way she’s going anywhere and has contacted the person who invited her to speak to tell him she can’t make it, but that she’s asked me and is hoping he’s okay with this change in plans. So we wait to hear from him and I go about my day, trying as best I can to not think about it.

Three hours before the event I was able to check my email and see that I’d been given the green light. I had a few things I needed to do before I could even think about what I would say, but because of an earlier conversation I’d had with Erich who organized the event, I felt I had a pretty good idea. Basically I intended to introduce Emma and begin by reading her A Letter to the World followed by Emma Discusses Awareness, a quote from something Emma wrote about Acceptance just a few hours before and ending with a question to Emma, “would you like to add anything?” An hour before the event I was in a panic, while Emma was cheerfully singing and dancing to Donna Summers, wearing her pretty party dress which she chose specifically for the presentation.

We arrived and Ari gave a terrific speech about autism, acceptance, the reason calling a group of people “burdensome” and an “epidemic” is hurtful and problematic and then it was Emma’s turn. After I read Emma’s words about “Awareness” I said, “I asked Emma earlier today what she thought about awareness versus acceptance. Emma wrote, “I am aware of many things, and so are you. Acceptance takes more dedication.” I paused and then turned to Emma and said, “Do you have anything else you’d like to add?” I held her stencil board and gave her a pencil. Emma wrote, saying each letter as it was pointed to, “Yes. Autism was not something parents wanted to hear, but I hope that will change when more people meet someone like me.”

Applause.

I intended to post the video of the whole thing here, but our camera had a different idea and when we returned home, excited to see the footage, nothing had been recorded. And because we thought the whole thing was being recorded we didn’t bother taking any still shots either. So other than a few photographs of Ari, we got nothing. (Insert sad emoticon.)

Regardless, Ari and Emma rocked and I’m guessing at least a few people came away with a very different idea of what autism is and isn’t. And if I’m right then it was worth every second.

Yesterday C-Span covered “Lawmakers Look into Federal Response to Rising Rates of Autism.” For those of you interested in seeing all 3 hours and 48 minutes of it click ‘here‘. You can also read all eight transcripts of testimony by clicking on each link ‘here‘.

There were two Autistic people of the eight who spoke. This, in and of itself was significant. The last two speakers were Michael John Carley, executive dircetor of Global & Regional Asperger Syndrome Partnership (GRASP) and Ari Ne’eman, President of Autistic Self Advocacy Network.

Michael, at one point said, “…research is geared towards the future, and not where the greatest need lies, which is in the present. Today, the amount of services we collectively provide is like one page out of War and Peace when compared with what’s needed.”

He went on to talk about language, “Tone, and language may seem like pc-nonsense semantics to many, but not to someone on the spectrum who grows up having to hear words like “cure,” “disease,” “defeat,” and “combat” …”

“Such negative self-imagery makes self-esteem so much harder to achieve for an individual who is at a psychological disadvantage enough as it is. We have to remember that the vast majority of this population can read what is being written about them, and hear what is being said about them.”

Ari Ne’eman spoke last. His was a riveting and powerful speech in which he spoke to the “epidemic” of Autism, “If we want to put the idea of an “epidemic” to the test, one of the most compelling lines of research we could pursue is an epidemiological study of the rate of autism among the adult population. A recent study of this nature conducted by the United Kingdom’s National Health Service found a comparable rate of autism in adults as in children in England.”

Ari spoke of those who are non-speaking Autistics, “If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering Autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today.”

He went on to point out, “Autism Speaks and the Simons Foundation – devote even less to these areas, with Autism Speaks investing approximately 1% of its research budget to studies on the quality of services to Autistic people (and less than one quarter of a percent to Autistic adults) and the Simons Foundation making no investments in either area. It cannot be doubted that when it comes to the needs of Autistic people today both the public and private research agendas are quite simply not responsive to the priorities of the Autistic community, itself. ”

And he talked about the importance of Medicaid, the importance of providing assistance to those just entering the work force and those who would like to, but do not have the supports in place to do so.

Ari ended with – “I want to thank the Committee members for allowing my community – the Autistic community – the opportunity to have a voice in these discussions. The challenges society currently faces in integrating and supporting Autistic people and our families are not new. We have faced these challenges and made tremendous progress with other disability groups in the past. I believe that at the end the day this is a civil rights issue. I believe in the ability of the United States of America to guarantee the civil rights of all of its citizens. Autistic people want and deserve the same things that anyone else wants – inclusion in our communities, the opportunity to go to school and get a good job, the chance to make our voices heard about the things that matter to us. With your help, we can make that a reality.”

His final words were, “I look forward to hearing your questions.”

I was eager to hear the questions that would undoubtedly be asked of both him and Michael after such terrific speeches, particularly as they are both Autistic, the very people this entire hearing were meant to care about and want to help. So I waited. And then I waited some more.

Finally there were a few, but the majority of people who spoke continued to repeat those words that Ari and Michael had cited, as though they’d never been said. It seems we care about Autism and our Autistic children specifically, but when it comes to “Autistic people” in general, we don’t care so much.

And so I’d like to know, Why is that?

How is it that we can say we “care” about Autism and those who are Autistic yet not fund programs that will make their lives better? How is it we can use words usually reserved for war and ignore that these words make those who are on the spectrum feel badly about their very existence? Is this how we want our children to feel? Do we really want our own children to feel their existence is called into question? Let’s just say, for the sake of argument, that our Autistic children, whether they speak or not, whether they are in a special education classroom or are mainstreamed, let’s just say, ALL of them can and do understand what is being said about them, but they cannot tell us or do not have the ability to communicate how that feels. Can we at least imagine what that would be like if this were done to us? Can we try, just for a moment to have the “empathy” needed to imagine? Are we compassionate enough to pause, even if for a moment and consider the implications of what we are saying and doing? Even if we cannot or do not want to think about all the Autistic adults whom we do not know, can we just think about our own child? Our children will be adults one day, do we really want them to feel as so many Autistic adults do? Our children have feelings.

The Autcom conference was a fleeting glimpse into paradise. A tiny taste of how the world could be were we accepting of each other, treated all people as equals and with respect, without prejudice, without assumptions, without bias. Autcom was a window into how the world could be, but isn’t. Not yet. Words do not do this conference justice. How could they? How do you describe a room full of people who are connected not through race, nationality, religion, political views or neurology, but instead are connected by an idea. A vision. How do you describe that?

Accommodation – it’s a word we hear, but what does it really mean? At the Autcom conference it meant waving hands at the end of a presentation instead of clapping, lowered lights, snacks that included gluten-free and casein free items and non dairy alternatives. Accommodation meant no one stared disapprovingly at anyone who stimmed or made noise or got up to leave in the middle of a talk. Accommodation meant people were polite and moved chairs that might be blocking someone’s ability to come or go. It meant using a microphone or repeating a question for those who weren’t able to hear the first time. It meant being respectful and considerate when someone came up to peer at your name tag and it meant understanding that when that person gently touched your hand after a presentation it was their way of thanking you and I defy anyone to not see the beauty and love in that. Accommodation meant slowing down while someone typed their answer or question or thought. It turns out accommodation means being a thoughtful, considerate human being who is respectful of others. How is it this isn’t done automatically, as a matter of course. How is it that we as a society have drifted so far from this very basic and easy way of being in the world?

The single biggest issue I had with this wonderful conference was that there were too many terrific things going on at once and it was impossible to see and hear everyone and everything. To give you an example of this – on the first day of the conference after Ari Ne’eman’s welcome and an opening keynote address by Jennifer Paige Seybert, was Savannah Nicole Logsdon-Breakstone’s presentation – Loud Hands Project’s Neurodiversity 101. At the same time, Larry Bissonnette, Pascal Cheng, Harvey Lavoy and Tracy Thresher were doing a presentation on Supported Typing, which I really needed to go to in order to assess whether this might be something we could use to help Em communicate more effectively, but next door to them was Nick Pentzell, Hope Block, Jacob Pratt and Autumn Dae Miller presenting “Rated “R”: That Oh-So-Difficult Topic”. I cannot tell you how much I wanted to hear them too and later heard from others that it was a not to be missed presentation, sadly though, I missed it. Human Development Journey was presented by Cecilia Breinbauer about using DIR, which was the method Richard and I were trained in by the late Stanley Greenspan, after abandoning ABA.

Ari Ne’eman

Jennifer Paige Seybert

That evening after dinner and a wonderful performance by Jordon Ackerson who reminded me of Emma because of his beautiful voice, we watched Wretches and Jabberers, with a Q&A with Larry and Tracy. This was my third time watching this documentary, which I posted about last month ‘here‘. I asked them about self-injurious behaviors, something both engage in during the film. I asked for their opinion about the commonly held belief by many that SIBs should be thwarted and how parents and caregivers are often unsure how to deal with this. Tracy typed, “That was years of frustration with no way to reliably express myself working its way out through my behavior the problem was lack of communication which pissed me off.” Larry typed, “I lived in an institution so I was locked in arms of restraint its legal but immoral and only represses anger nothing looks more kind than softly spoken words and lit up smiles.”

Jordan Ackerson

Tracy Thresher

Larry Bissonnette

Read that again. “… nothing looks more kind than softly spoken words and lit up smiles.” The presentations were terrific, but it was what is possible that this conference represented, which affected me most profoundly. The AutCom conference was an example all organizations, who say they are interested in Autism and helping those who are Autistic, should follow. Autistic people make up a large portion of their board, Autistic people led more than 50% of the presentations, the audience was at least half Autistic, if not more. At my presentation there were more Autistic people than not, for which I was truly honored by. The conference showed what the world could be like if we work together, reach out to each other, include everyone despite our perceived differences with love, compassion and kindness. Accommodation is less about accommodating and more about getting in touch with our humanity and what it means to be alive and sharing this planet together. Accommodation and inclusion means we ALL benefit.

I am in Baltimore at the AutCom Conference. Since the conference begins first thing in the morning, I arrived yesterday afternoon by train. As I waited for the shuttle service to arrive I witnessed a group of men yelling at each other. Suddenly one enormous man lunged at another, grabbed him by the throat and began to strangle him. Several other men jumped in, amidst lots of yelling and swearing and finally were able to pry the two apart, only to have the one who had been strangled race after the strangler, shouting descriptive words which I cannot repeat, mostly because other than a few F bombs, I couldn’t figure out what he was saying, though by the look on the attackers face, they weren’t friendly. After witnessing two men practically killing each other, I was greatly relieved to see the shuttle pull up to whisk me away.

The van driver stopped only once to pick up a party of six elderly men who were off to a business retreat. The one gentleman seated next to me after having an animated conversation with his wife, though I’m not sure about her identity, but was clearly someone he knew well and felt comfortable hanging up on – twice – and then called back. Exhausted from all that, he promptly fell asleep listing so precariously in his seat that I feared he might just keel over completely. I scooted as far away from him as was physically possible lest he fall into my lap like a felled Redwood.

The drive was otherwise uneventful. Much to my delight the hotel looks out on a beautiful lake where I saw this… I believe this is a White Egret. I could be wrong, but in Northern California, where I grew up, I remember seeing one once and it looked a great deal like this.

A panoramic view of the lake.

Sculpture with the lake in the background…

The conference begins at 9:00AM this morning with a welcoming ceremony by Ari Ne’eman, followed by a keynote address by Jennifer Paige Seybert. I intend to then go to Julia Bascom and Savannah Nicole Logsdon-Breakstone’s presentation – The Loud Hands Project. However Larry Bissonette, Pascal Cheng, Harvey Lavoy and Tracy Thresher (of Wretches and Jabberers) are also presenting at the same time, and I’d love to hear them too. The entire conference is a who’s who of wonderful presenters. I don’t know how anyone is able to choose!